Involvement of adolescent representatives and coresearchers in mental health research: Experiences from a research project

Abstract Introduction In spite of adolescents' rights to be involved in decisions that concern their health and life, limited research has been published reporting on their involvement in mental health research. Therefore, we aim to present experiences and reflections based on the involvement of adolescents in mental health research, to describe the collaborative relationship between researchers and coresearchers, including the values that underpin their collaboration. Methods An autoethnographic approach was used, combined with group reflections. The process was jointly developed, carried out and analysed by adolescent coresearchers and the project's lead researcher over a period of 2 years. The article is jointly authored by the researcher and the ten coresearchers. Results Six themes were developed to describe our collaborative relationship, resulting in the involvement of adolescents in decisions about research priorities; in planning and carrying out the research; through to analysis, dissemination and communication of results. The themes include: (1) Commitment motivated by altruism, personal interests and a common purpose; (2) Inclusiveness and support to reduce social uncertainty and strengthen collaboration; (3) Reduced power differentials while ensuring clarity of roles and tasks; (4) Diversity in representation to expand the perspectives of ‘the adolescent voice’; (5) Self‐determination—supporting adolescents' involvement in decision‐making processes; and (6) Flexible and systematic project management. The themes describe the collaboration, the underlying values and motives, the challenges faced and how they were overcome. Conclusion This self‐reflective process describing a 4‐year collaborative research project resulted in the development of recommendations for involving adolescents in mental health research. The recommendations could potentially contribute to a change of ‘research culture’ to expand the currently limited involvement of adolescents in research. Patient or Public Contribution Adolescents have contributed as coresearchers through all phases of the research project and as coauthors of this article, including planning, participation in the self‐ and group‐reflective processes, analysis and authoring the article.


| INTRODUCTION
According to the United Nations' Convention on the Rights of the Child, adolescents should be able to enjoy the highest attainable standard of health (Article 24). 1 Their rights should be respected irrespective of their and their parents' or legal guardians' 'race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status' (Article 2). Furthermore, one of the four general principles of the UN Convention on the Rights of the Child (Article 12) states that children should have the right to express their views and their opinion should be given due weight. The Council of Europe points out that each country should ensure that adolescents are listened to and involved in any decisions affecting them. 2 In its Manual on the Revised European Charter on the Participation of Young People in Local and Regional Life, the Council of Europe describes different levels at which youth can be involved, ranging from 'nonparticipation' through to being informed, consulted, or involved in decision-making processes and sharing decisionmaking power. 3 Adolescents may be involved and influence healthcare services at an individual, systems or political level. At the individual level, they may influence their own healthcare, for example, by stating their wishes for treatment and support, or by being involved in decisionmaking processes to improve the services they receive. At the systems level, they can influence the healthcare services for other adolescents, for example, through the development, review or improvement of hospital psychiatric departments. They may at the political level influence decisions made by regional or national healthcare authorities. The results of our systematic review on user involvement in adolescents' mental healthcare suggest that there is some research evidence reporting on adolescents' involvement at the individual level, where they are heard and take part in decisionmaking processes, whereas we found less evidence reporting on adolescents' involvement at the systems level. 4  We will also present our recommendations for involving adolescents in mental health research.

| The project background and context
The research project, entitled InvolveMENT, was established in 2017 and aims to contribute to improving mental health services for adolescents. Participation of adolescents throughout all phases of the research has been a key priority since the start of the project (described later).
The research project is based within SHARE-Centre for Resilience in Healthcare at the Faculty of Health Sciences, University of Stavanger, in Norway. The research centre was formally established in March 2017 and was based on a patient safety research programme running from 2011 to 2017. It aims to be an internationally recognized research centre in the field of quality and safety of healthcare systems using a new and comprehensive resilience in healthcare (RiH) framework. It includes over 70 researchers in various clinical fields and at different service levels, including primary, secondary, prehospital and transitional care. Patient and stakeholder involvement is one of the centre's six strategic research priorities (2018-2022). 9 Patients, carers, citizens and other major stakeholders are included as equal partners in the centre's research activities, and a stakeholder reference group provides recommendations to the research centre.
One of the adolescent mental health research project coresearchers (L. G. M.) also became a member of the research centre's stakeholder panel.
Adolescent representatives and coresearchers were recruited to the research project from upper secondary school and mental health services. They were not participants in the study, but were first included as representatives and later changed status to coresearchers.
Their participation was therefore regulated by legislation relating to their general rights for self-determination, rather than legislation relating to medical and health research. The individual's right to selfdetermination is a central principle in Norwegian legislation. Any competent person has such rights from the age of 18. Moreover, the rights for self-determination gradually increases with age and from the age of 15, adolescents have the independent right to make decisions concerning their education and work life. 10,11 All adolescents were at least 15 years and could therefore make the decision to join the project without seeking their parents' or legal guardians' consent.
The roles and responsibilities of the University, the researchers and adolescent representatives were agreed upon at the onset of the collaboration (Appendix SA). This included issues, such as adolescents' ownership of their own academic material and their right to leave the project at their own discretion at any given point in time should they wish to do so; the researchers' right to make final decisions concerning the research and their ownership of academic material produced as part of the research project; as well as the University's financial responsibilities. It also addressed issues such as remuneration and confidentiality. Although the agreement aimed to clarify the rights and responsibilities of all parties, it also expressed the intention to develop a collaborative relationship, for example, by pointing out that adolescents would be consulted to integrate their views and opinions into the research. As representatives, they were asked for and provided their comments to research planned and carried out by researchers. Their status was changed to coresearchers when they initiated, planned and carried out parts of the research project with the support of the project researchers. This transitional process is further described in Section 3.

| Adolescents' contributions to the research
Adolescents participated in setting research priorities, planning research (systematic review, qualitative study, surveys and trials), developing survey questionnaires, recruiting participants, analysing results, dissemination (academic) and communication (nonacademic), and by initiating some of the research. Involvement varied for different parts of the research project and took place at three levels, as suggested by Oliver et al. 12 : consultation, collaboration and control.
Consultation meant that adolescents' opinions were sought by researchers; collaboration implied a closer interactive process where decisions were jointly agreed; whereas adolescents initiated and made their own decisions when exerting control, but with the input and support of the researcher. An overview of adolescents' most important contributions to the research project is presented in Table 1.

| METHODS
Ten adolescent coresearchers and the project's lead researcher are the authors of this article. We used an autoethnographic approach, 15 combined with paired and group-reflective processes to deepen our understanding of our collaborative relationship. The autoethnographic method involves the active participation of researchers through a self-reflective process that may evoke memories, thoughts and feelings. Therefore, it differs from an autobiography, which involves recollection of past experiences; and is more like an ethnographic approach studying aspects, such as values, beliefs and experiences within a culture, with the distinction that the individuals studied are the researchers themselves. 16 By using an autoethnographic approach, we could go beyond merely 'telling our story' and engage in a deeper reflective process to explore our own experiences, values and beliefs. Hence, we served as the primary tool in both data collection and analysis.
The research process was initiated by the lead researcher   Thoughts on what we considered key issues were discussed during meetings, and notes of meetings were kept. We learned from each other and gained a deeper understanding of our thoughts and values.
The content of each discussion area was gradually developed. Descriptions of the content of each theme eventually resulted in proposals for themes, which were agreed through consensus processes during group meetings. We used our narratives to develop themes describing our experiences, as well as the nature of our collaborative relationship.
We subsequently developed our recommendations for involving adolescents in mental health research.

| RESULTS
Six themes describe our collaborative relationship, including the underlying values and motives for participating in the project, the challenges faced and how they were overcome. The themes that have been developed through our self-reflective processes, paired and group discussions are: 1. Commitment motivated by altruism, personal interests and a common purpose.
2. Inclusiveness and support to reduce social uncertainty and strengthen collaboration.
3. Reduced power differentials while ensuring clarity of roles and tasks.
4. Diversity in representation to expand the perspectives of 'the adolescent voice'. 5. Self-determinationsupporting adolescents' involvement in decision-making processes.
6. Flexible and systematic project management.
We use examples to illustrate how each of the six themes has been essential to our collaborative relationship. Although we have agreed on and present the results in the following sections as a collective group, we will clarify when we refer to perspectives presented by one or several coresearchers, or the lead researcher.

| Commitment motivated by altruism, personal interests and a common purpose
An important value held by us all was a selfless interest in contributing to the welfare of adolescents. Were the sources of such an altruistic mindset due to biological factors or sociocultural conditioning? How did our own past experiences influence our motives?
Or were the motives not so altruistic and more fuelled by a form of self-gratification by contributing to (hopefully) improve the mental health services for adolescents?
We agreed that there was an element of 'altruism' and we considered empathy to be an important quality. When asked the question: 'What value is needed to participate in the project?' one coresearcher em- Some of these benefits have also been highlighted by others. 5 Through our participation in the research project, some of us fulfilled an obligation to participate in extracurricular activity required as part of our secondary school degree. Moreover, participation in the project was beneficial to some of us who applied to be accepted as university students abroad, two of us were invited to participate in a reference group in another research project, and one member got a position as a research assistant at another university.

| Inclusiveness and support to reduce social uncertainty and strengthen collaboration
It was initially a daunting experience for us as teenagers to become involved in a University research project. First, we felt unprepared. In spite of our initial uncertainties and concerns, our experiences with the collaboration were positive. We soon felt quite free to openly express our opinions, with each other and with the lead researcher, even when discussing issues in the field of mental healthcare that were somewhat sensitive or potentially controversial. This was facilitated by the inclusiveness in the project, where the lead researcher was genuinely interested in our opinions and over time we saw that they were also used to inform decision-making processes. When first joining the project as representatives, we had an expectation that the researcher-adolescent relationship would resemble a teacher-student or boss-employee relationship where the researcher would be 'superior' in some ways. Being undermined by authority figures was a common experience for us. We expected to be met with misconceptions of lacking experience and knowledge.
We did not expect a two-sided collaborative relationship where our thoughts and perspectives were emphasized in research decisions.
'I assumed we would sit in a room once a month and talk about our ideas while a researcher took notes, but I did not expect to be as involved as we have been'. One of the first roles we took on was as coauthors of a systematic review assessing user involvement in adolescents' mental healthcare. As part of this process, we were consulted on articles where the other coauthors-who were all university researchers-had differing opinions. We were not used in everyday life to professionals actually listening to what we had to say. Our views were taken into consideration and consensus decisions were eventually reached. We were also surprised when we were trusted to organize and run a seminar. This helped us understand our importance in the roles of adolescent representatives and coresearchers. We think that the research project should continue to strive to hear the voices of those groups of adolescents who have not been heard.
This may include for example those who drop out from school and adolescents of different minority groups. were involved in various decision-making processes.

| Self-determination-supporting adolescents' involvement in decision-making processes
One challenge associated with the principle of self-determination was the recruitment process. Most adolescents were invited to join the research project during three secondary school meetings. They expressed their interest to the school's management, which selected those who they thought could participate. Hence, adolescents volunteered to participate, but the school served as a gatekeeper for adolescents' participation in the project. This was agreed between the researcher and the school, due to concern that participation might potentially be challenging to adolescents who were currently struggling with their own mental health issues. We, the coresearchers, later discussed the recruitment process and although we were happy that we were selected, we believed that adolescents should in principle have the right to determine whether they have the capacity to participate, following discussions with the researcher.
Another example was the use of adolescents' title. Initially, the term 'user representatives' was used, which the first two adolescents who joined the project instantly rejected. They explained that 'we do not want to use this term, as it may suggest that we are current users of mental health services, which we are not'.
We jointly agreed that we wanted to limit any confusion about their roles, and to ensure that it would be understood by all parties, as well as 'the outside world'. This resulted in the decision to use the title 'adolescent representatives'.

| Flexible and systematic project management
There was initial uncertainty as to what extent and in which ways adolescents would be interested in and able to participate in the research project, considering tight schedules with commitments within and outside school. We, the adolescents, had to somehow be given the freedom to be as involved in the project as we could and wanted to; and at the same time familiarize ourselves with each other and the research project. The process included a great deal of flexibility in terms of planning the research, agreeing roles and tasks and practical details, such as agreeing on times and venues for meetings.
This flexibility was helpful to us to facilitate inclusion in the project.
For example, while planning the mental health seminar, we met later in the day and during weekends to schedule around the school day.
The researchers needed to be willing to make this type of 'sacrifice' to involve us in their research. However, flexibility also meant that it was more difficult to set short-and long-term goals that could have helped to develop the project faster. Careful thought is needed to balance inclusiveness with effectiveness.
As we have grown older and finalized secondary school, we have

| DISCUSSION
This study adds to the limited research evidence reporting on adolescents' involvement in mental health research. 6 The small amount of research published in this field stands in contrast to the increasing expectations that researchers should involve members of the public in their research. In some instances, the involvement of patients or the public has even become a requirement, for example, for some funding applications. In our experience, most adolescent mental health research projects only involve youth in limited ways such as asking for their input to interview guides. Such involvement can be helpful but may risk missing out on the full potential benefits of more extensive involvement and it may in some instances also become tokenistic.
So what are helpful ways of ensuring meaningful and effective forms of collaboration with adolescents or youth in mental health research? We propose a 10-point checklist as a basis for Ethical implications of involving adolescents in the research should also be considered. Some have expressed concern about the impact involvement may have on youths' own mental health. 8 Although we agree that this may be a concern for some adolescents, we have not experienced any negative impacts. We suggest that adolescents should be allowed to participate to the extent that they feel they can manage; that researchers and adolescents could regularly check if everyone is doing well and appropriate support systems are in place. Another ethical aspect that may need consideration is confidentiality and informed consent. This should also be discussed between researchers and adolescents, and others also propose there could be specific training to address such issues. 5

| STRENGTHS AND LIMITATIONS
The main strength of this article is the joint collaboration between the researcher and the coresearchers, with extensive contributions from coresearchers through all phases of the research. Hence, the results provide a report by, rather than about, coresearchers. This was more in line with the core values of the group and the agreed principles of involving adolescents in all phases of the research. The addition to this study of other researchers and clinicians who were involved in the overall research project could have influenced the overall results.
However, the main focus was to emphasize the voices of coresearchers and the researcher who worked most closely with them.
The use of an autoethnographic approach meant that coresearchers were reflecting without the 'interference' of a researcher and the results were also interpreted by them, rather than by researchers.
The fact that the autoethnographic approach was relatively timeconsuming may be considered a disadvantage, but this could also be seen as an advantage as the process contributed to further strengthening the collaborative relationship within the group.
The fact that adolescents did not have an academic research background could be considered a limitation. They did however receive some training from the project lead who is an experienced researcher, and who also provided guidance for the autoethnographic approach and in writing this article. Most coresearchers speak English well, which also helped to facilitate the writing process.
As previously stated, a limitation of this study is that we have not

CONFLICT OF INTERESTS
The author declares that there is no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.

AUTHOR CONTRIBUTIONS
Petter Viksveen, Julia R. Game and Nicole E. Cardenas initiated the development of the research and developed the initial project plan.
The remaining authors contributed to planning the research. All authors contributed to the data collection process and the data analysis.
Petter Viksveen led the manuscript development and all coauthors contributed. The final manuscript was approved by all authors.

DATA AVAILABILITY STATEMENT
Data are available on request due to privacy/ethical restrictions. The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.